← Return to Anyone living with Essential Thrombocythemia with JAK2?

Discussion
Comment receiving replies
Profile picture for janemc @janemc

We each experience ET and HU differently.

But we all have one thing in common: When we tell our doctors about issues we're experiencing, we're dismissed.

I for one am going to acknowledge my symptoms (fatigue, headaches, congestion, constipation), try my best to address them, and not expect myself to be brave and jolly every minute of every day.

I am glad to take HU, because I don't want to die of a stroke, or to deplete my bone marrow. But I refuse to say that ET is a walk in the park.

HU comes from China, India and Europe, so every capsule is subject to punishing tariffs. Dramatic price increases and reduced availability loom.

Jump to this post


Replies to "We each experience ET and HU differently. But we all have one thing in common: When..."

@janemc Droxia, the brand name drug, is subject to US tariffs. My pharmacy uses generic hydroxyurea, and generics are not subject to tariffs right now. However, the political situation with countries that supply generic prescription meds is fluid. They could be tariffed or the countries that manufacture them could reduce supplies to the US as a retaliatory move. Your pharmacist can give you info about what med supplies look like in your location.

@janemc I had what I think was an extreme autoimmune reaction (joint / tendon pain and stiffness, muscle weakness, including difficulty swallowing and severe swelling with red sores on ankles) after taking HU for 1 month. My hematologist said he didn’t think it was possible that my symptoms were caused by HU, but by another medication. I stopped both for a few weeks, but restarted HU after my platelet count doubled. I then had a similar reaction just a few hours after taking the second daily dose. I saw him a few days ago for a follow up, and he finally said he was going to believe me! So big of him! But at least I don’t have to continue looking a second opinion. Now he is hopefully going to work with my rheumatologist to come up with a treatment plan. They are considering Jakafi, but will probably have to try anagrelide first.